The Educational Needs of Adolescent and Young Adult Renal Transplant Recipients—A Scoping Review

Renal transplantation is the gold-standard treatment for adolescents and young adults with end-stage renal disease. Despite enjoying excellent short-term outcomes, they suffer the worst rates of premature transplant function loss. Health behaviors: such as lack of adherence to immunosuppressive medications, are felt to be the major contributory factor. Understanding the educational needs of young renal transplant recipients allows healthcare practitioners to better support patients in managing their chronic disease. The aim of this scoping review was to understand what is known about their educational needs. A scoping review methodology was followed. Following an online search, study titles, and abstracts were screened for eligibility, followed by full-text assessment and data extraction. Data were qualitatively analyzed using thematic analysis. A total of 29 studies were included in the scoping review. In young people who struggled with self-management, three themes were identified (1) the Needs of the disrupted youth, (2) the Needs of the disorganized youth (3) the Needs of the distressed youth. There was a paucity of research to identify the protective factors that enable young recipients to successfully manage their health. This review outlines current knowledge of the patient education needs of young transplant recipients. It also highlights remaining research gaps that will need to be addressed with future research.


Introduction
Children on hemodialysis have a reported 55-fold increased mortality risk compared to the healthy population of a similar age [1]. Cardiovascular disease mortality accounts for 40% of deaths of young adult end-stage renal disease (ESRD) patients (500 times increased risk compared to the general population) [2]. Renal transplantation is the 'gold-standard' renal replacement therapy available to patients who reach ESRD providing significantly longer quantity and quality of life to patients [3]. Transplantation has been consistently shown to dramatically reduce mortality in patients with ESRD, with some studies reporting a reduction in up to 84% [4].
For young people, the benefits of transplantation are multiple and diverse and go beyond the excellent survival benefits. The overall accrual of disease burden is significantly less than when on dialysis, and a functioning transplant graft facilitates normal growth and development [5]. Young adult transplant recipients report increased exercise tolerability [6], better energy, and an enhanced sense of wellness compared to when receiving dialysis therapies [7]. Transplantation offers young people a less disrupted education and allows them to engage more fully in the workplace [8].
Despite the overwhelming benefits of transplantation, it is also associated with challenges. Many young transplant recipients (up to 30%) show symptoms in keeping with post-traumatic stress disorder (PTSD) after transplantation [9]. Patients can have bodyconfidence issues due to scars related to the operation [10]. Recipients also must become accustomed to attending regular appointments and adhering to a strict medication regimen whilst dealing with the complications associated with long-term immunosuppressive therapies (some with obvious early manifestations such as weight gain and acne seen with steroids) [11].
Adolescents and young adults enjoy better short-term outcomes following renal transplantation than any other age group [12]. Despite better initial outcomes, later rates of graft loss in adolescents and young adults are the highest of all age groups [13]. The mean survival of transplant grafts has been reported to be 7 years in younger recipients [14] compared to 10.4 years in all recipients from deceased donors [15]. This means that 50% of patients who have been transplanted in childhood will require a second transplant before reaching 25 years of age [16].
Albeit complex and multifactorial, the reason for the high rates of transplant graft loss in this group is often attributed to health behaviors and lack of adherence to prescribed therapies [17]. Adolescents and young adults have a higher rate of non-attendance to transplant appointments where monitoring and interventions to prolong graft function can be planned [18]. They also have higher rates of admission for transplant-related problems via emergency departments suggesting late presentation with complications-making recovery of transplant function more difficult [19]. Premature loss of a renal transplant is associated with increased mortality, increased morbidity, increased mental health problems, and decreased quality of life [10]. Finding a second suitable kidney for transplantation can often be difficult in this population due to the development of antibodies, and if compliance is suspected to be an issue, clinical teams can be wary of putting patients forward for subsequent transplantation [20]. Hence, young people with failed transplants often wait for long periods of time for a second transplant and are typically disproportionally represented in the suspended transplant waiting list [21].
Given the high association between health behaviors and patient education in young people with chronic diseases [22], it is crucial that healthcare practitioners are aware of and appreciate the educational needs of young transplant recipients. By understanding and ultimately addressing these educational needs, premature renal transplant loss in adolescent and young adult recipients may be avoided. The aim of this review was to understand what is known about the educational needs of adolescent and young adult renal transplant recipients within the literature.

Methods
A scoping review is defined as "a form of knowledge synthesis that addresses an exploratory research question aimed at mapping key concepts, types of evidence, and gaps in research related to a defined area or field by systematically searching, selecting, and synthesizing existing knowledge" [23].
This study was completed adhering to the methodological recommendations and steps as laid out by Colquhoun et al., 2014, Levac et al., 2010, and Arksey, 2005. The six steps, as outlined by Arksey, 2005 were followed in the construction of the protocol, and any deviations were documented. The reporting of this review followed the reporting guidance by the PRISMA extension for scoping review [26], which can be viewed in the supplementary information.

Eligibility Criteria
All primary research related to adolescent (defined as aged [10][11][12][13][14][15][16][17][18] or young adult (defined as aged 18-24) renal transplant recipients' educational needs were eligible for inclusion. Professional reports, quality improvement projects, and editorials were not included. Studies where other solid organ recipients were included and data pertaining to renal transplant recipients only could not be separated were excluded.

Search Strategy
From the research question, a search strategy was developed with the assistance of a medical librarian. Six online databases were searched for relevant articles-OVID-Medline, EMBASE, Web of Science, Scopus, CINAHL, and Psychinfo from inception until 17 December 2022. A targeted grey literature search was also conducted for further articles for inclusion. An example search strategy can be viewed in the supplementary information.

Study Selection and Data Extraction
Initially, titles and abstracts of selected articles were reviewed for appropriateness for full text review against the inclusion of material by two members of the research team. The full-text review was then conducted independently by two researchers. Disagreements for full-text inclusion/exclusion were solved by consensus or arbitration by a third party.
Data were then extracted from each included article using a pre-designed data extraction tool. A completed data extraction tool can be viewed in the Appendix A.
The following information was extracted from each selected study; •

Data Analysis
Both qualitative and quantitative studies were identified, so a mixed methods approach was taken for data synthesis. The approach outlined by the Joanna Briggs Institute for mixed-method data analysis in synthesis reviews was utilized [27]. A convergent integrated approach was applied where quantitative data were initially extracted and then transformed into qualitative data by creating textual descriptions to create qualitative summaries of the data from the quantitative results [27]. These newly formed qualitative data were then coded by members of the research team along with the already qualitative studies using traditional content analysis [28]. In keeping with the scoping review methodology, data quality assessment nor assessment of bias for individual studies was not completed.
The results of the thematic analysis were discussed in a consultative exercise with young transplant recipients and healthcare professionals involved in transplant education to enrichen and validate the analysis. This step aided in refined and bringing together individual codes to form the themes derived in the review and bring the patient perspective to our findings.

Results
A total of 2954 records were identified through database searching, and an additional 13 records were identified through grey literature searching. Following duplicate removal and abstract screening, the full text of 394 articles was reviewed. A PRISMA 2020 flow diagram [29] can be reviewed in Figure 1.

Qualitative Analysis of Selected Studies
Three themes of an investigation by researchers emerged from the studies following the thematic coding of the data: 1.
The needs of the disrupted youth 2.
The needs of the disorganized youth 3.
The needs of the distressed youth e 2023, 11, x FOR PEER REVIEW

Qualitative Analysis of Selected Studies
Three themes of an investigation by researchers emerged from the studies fo the thematic coding of the data: 1. The needs of the disrupted youth 2. The needs of the disorganized youth 3. The needs of the distressed youth

The Needs of the Disrupted Youth
Some young transplant recipients appear to face substantial delays in their edu and their levels of qualifications are lower than their peers [30]. The disruption to tional attainment is particularly marked by already vulnerable groups, such as tho ethnic minorities or those belonging to lower socioeconomic groups [8]. Those w achieve high educational and professional attainment are more adherent to immu pression medications and are at a reduced risk of developing depression or anxiet Studies also investigated how disruption to their youth impacts young tra recipients meeting major psychosocial milestones [30]. Young adult transplant re remain living with their parents at much higher rates than their peers and appe delayed in developing romantic relationships [31]. The delay in reaching psych milestones in young transplant recipients reduced their sense of autonomy, their s tion with life, and their own attitudes to health [32].
Researchers suggest that young people who are supported to reach their ful tial (either professionally or personally) seem to enjoy additional protection from and depression and even have better clinical outcomes, such as improved transpla tion [33].

The Needs of the Disrupted Youth
Some young transplant recipients appear to face substantial delays in their education, and their levels of qualifications are lower than their peers [30]. The disruption to educational attainment is particularly marked by already vulnerable groups, such as those from ethnic minorities or those belonging to lower socioeconomic groups [8]. Those who do achieve high educational and professional attainment are more adherent to immunosuppression medications and are at a reduced risk of developing depression or anxiety [8].
Studies also investigated how disruption to their youth impacts young transplant recipients meeting major psychosocial milestones [30]. Young adult transplant recipients remain living with their parents at much higher rates than their peers and appear to be delayed in developing romantic relationships [31]. The delay in reaching psychosocial milestones in young transplant recipients reduced their sense of autonomy, their satisfaction with life, and their own attitudes to health [32].
Researchers suggest that young people who are supported to reach their full potential (either professionally or personally) seem to enjoy additional protection from anxiety and depression and even have better clinical outcomes, such as improved transplant function [33].

The Needs of the Disorganised Youth
The selected studies focusing on the importance of young transplant recipients developing organizational skills, engaging with their health, and having self-motivation as they hypothesized that this would lead to better transplant and overall health outcomes.
The largest reported barrier to developing self-reliance skills in recipients was a lack of knowledge and understanding of their condition and medications. Studies described how recipients feel disengaged with their own health and often are disempowered due to a lack of health knowledge [34]. Those who were transplanted at a young age were at the most risk of having insufficient health knowledge as education efforts at the time of transplantation were directed at their parents [35]. When recipients begin to take increasing responsibility for managing their own health, they often feel overwhelmed and underprepared and are subsequently more likely to partake in health-risky behaviors [36].
Many young adult transplant recipients lack coping mechanisms or strategies to help them deal with the extra organizational burden of being a transplant patient [31].
Researchers investigated barriers to the normal development of these important traits and skills in young transplant recipients. A lack of, or disruption to, the routine was suggested to be detrimental to recipients' organizational skills acquirement. Periods such as weekends, leaving the family home, or transitioning from pediatric to adult health services were associated with reduced compliance to medication and were highlighted as times when support was most required [37]. Good family support and help in developing organizational skills, particularly with taking medications, were protective against poor health outcomes [38,39]. This transition from dependent child to independent adult often leaves recipients feeling unprepared, uninformed, and unable to become fully responsible for their health-increasing their risk of complications, especially around clinic attendance, blood sampling, and medication compliance [40].

The Needs of the Distressed Youth
Studies showed that young transplant recipients craved "normality" and wished to be viewed as similar to their peers [35]. Some young recipients had a level of disappointment following transplantation as they still did not feel "normal" and were unprepared for those emotions following transplantation [38]. Body image issues were commonly investigated by researchers [14], as were the side effects of medications related to transplants [41]. Young transplant recipients often reported high levels of depression and anxiety related to physical signs/symptoms related to transplantation and poor coping mechanisms to deal with this psychological burden [34].
Studies consistently demonstrated recipients reporting symptoms or diagnostic signs of anxiety, depression, irrational anger, and even post-traumatic stress disorder [39]. Psychological distress or a mental health diagnosis was the most important independent factor in predicting not only the quality of life of young recipients but also transplant-related health outcomes, such as graft survival [42]. Researchers found that young transplant recipients often have inadequate resilience or coping skills related to mental health [43]. The most deployed strategies observed in these young recipients were denial and avoidance (not wishing to talk about transplant/voice concerns). It was perceived that many young recipients had been inadequately prepared for the mental stresses associated with transplantation, were ill-equipped to be resilient to psychological stressors, and lacked sufficient support when dealing with mental health problems [44]. Two studies reported young transplant recipients who have developed symptoms consistent with PTSD. Interestingly PTSD symptoms did not seem to be related to clinical factors (such as the severity of illness, time on dialysis, and risk of mortality) but related to a complex adjustment to the variety of subjective stressors (body image, lacking normality, childhood illness, family dynamics) faced by young recipients [45].

Discussion
This review demonstrates the wide range of educational needs of young transplant recipients studied in the literature. Areas such as health literacy, self-management, and organizational skills may appear obvious and have been documented in studies of young people with other chronic physical illnesses [22]. Despite formal transition programs designed to aid this, some adolescent and young adult recipients still feel unprepared to manage their own healthcare and struggle when transitioning from pediatric to adult services [36,[46][47][48][49][50][51].
However, educational needs go beyond the recipient's understanding of their condition and how to take medications. The findings of this review would suggest that young recipients need additional support to meet educational/professional/developmental goals that are disrupted compared to their peers. Young people with other physical health conditions, such as diabetes mellitus [45], childhood cancer [46], and cystic fibrosis [47], have been shown to experience similar disruption. The inclusion of youth workers in the clinical team can help in advocating for patients and educating recipients and their families about the support available [22,43].
The review raises questions about how young people are prepared psychologically for transplant. Poor coping skills, disappointment from high expectations of life posttransplantation, and psychological toll all appear to be areas of educational need for young recipients. Given the associative links between mental health outcomes and overall transplant function [10,[52][53][54], assisting young people in developing good mental health practices may be a 'blind spot' in educational need in pre-and post-transplant care.
Interestingly very few studies investigated protective factors or what allowed some young transplant recipients to be successful in managing the burdens associated with transplantation. From the search strategy, there were no papers that fully explored demographic, social, or psychological factors that were associated with good outcomes (either transplant survival or quality of life-related). There also appeared to be few studies that explored the lived experiences of young transplant recipients who managed their condition well without complications.
This review highlights potential areas of research to better understand the educational needs of adolescent and young adult renal transplant recipients: (1) There is a paucity of research on how certain young people are successful and cope/adapt following transplantation which may help in developing tools to help other patients. (2) Educational needs of racial, ethnic, and religious minority groups and those from immigrant or socially deprived backgrounds need further exploration as these may be different from the general population.

Limitations
A scoping review is intended to map out and organize the current literature and does not assess the quality of the studies identified. Hence, the review is limited in its ability to confirm the validity of each study's claim of young recipients' experiences. However, given the wide-ranging and complex factors that affect educational needs, a positivist review methodology i.e., searching for the 'right' answer with a systematic qualitative review, would likely have also been limited in its conclusions. Truthfully, it will be hard for any review to generalize the experiences of adolescent and young adult transplant recipients from varying cultural and social backgrounds and healthcare settings around the globe. Therefore, the authors hope this review, inkeeping with scoping review methodology, will offer an appropriate understanding of the current literature and identify potential research gaps.

Implications
Support systems and health services need to be designed by clinicians to aid young people, and physicians should have knowledge of other professional services and members of the multidisciplinary team that can assist. Transplant physicians need to be particularly aware of the increased risk of anxiety, depression, and PTSD in these patients and be able to appropriately refer them to other services. Ultimately it is hoped that this review will aid in either targeting research or changing healthcare provision for young transplant recipients to improve their care. It should also highlight the importance of this issue and encourage more service providers to reach out and seek young recipients' opinions and voices. The findings of this review may be of interest to patient advocacy groups.

Conclusions
This scoping review has outlined the literature that addresses the educational needs of younger transplant recipients and highlights the gaps in our knowledge. Hence, for clinical teams to develop best practices in the management of young renal transplant recipients, further research is required. The transplant community needs to prioritize good quality research that is patient-centred and patient-led to better inform practice. In-depth qualitative studies that seek to fully explore the lived experiences of young transplant recipients could provide better insights into their unique educational needs. This, inturn, could help inform future intervention trials and hopefully improve outcomes for young recipients.

Institutional Review Board Statement: Not applicable.
Informed Consent Statement: Not applicable.

Data Availability Statement:
All data related to this study can be found in the main manuscript or in the Supplementary Files.

Conflicts of Interest:
The authors declare no conflict of interest. "being different from others," "not being invited as a decision maker," "becoming one of them," "still being different from others," "having mixed feeling toward mothers," and "coping with new circumstances." Small-specific population Grip strength was measured with a dynamometer. We asked about activity limitations and provider counseling. Univariate analysis and multiple linear regression were used to determine independent predictors of PAQ score and grip strength z score.
Median PAQ score was 2.2 (range 0-5) and was lower compared with controls (p < 0.001). The average grip strength z score was −1.1 and −0.7 in the right and left hand, respectively. Predictors of lower grip strength were younger age (p = 0.036), non-African American race (p = 0.029), lower height z score (p = 0.010), and longer percentage of lifetime with kidney disease (p = 0.029).
Relying on patient recall.

Zelikovsky [59] USA
To examine the potentially modifiable barriers related to adherence among adolescent kidney transplant candidates 56 Adolescents Cross-sectional study Once.
Interviews-around medical adherence and semi-structured interviews (parents present). Medical Adherence Measure (MAM) adherence interview. Qualitative Study.
Better knowledge of the medication regimen was associated with fewer missed doses Patients who perceived more barriers had more missed doses. Patients who endorsed "just forget," the most common barrier (56.4%), reported significantly more missed doses. Patient self-reporting. Small sample size. Didn't look at health provider related issues to adherence.